Tuesday, May 31, 2016

Spring in the Desert

Earlier this spring, thanks to a new ramp in the garage as well as a few other small accommodations, I was briefly able to sit outside in our driveway for the very first time.

Previously, the only way for me to get outside was through our backyard patio, which was difficult for me to access.  It often led to such a substantial set-back that I could only attempt it about once a year.  I am so grateful for this new set-up which allowed me to temporarily escape the confines of my room and briefly feel the sun on my face.  While my tiny excursions were not as frequent as I'd hoped, I savored every single minute. 

My view outdoors

 Gorgeous skies and mountain views

Verdin Visitor

Cactus Wren

A Blooming Desert

Spring is such a beautiful time of year here with all the trees and cacti in bloom.  It's so lovely to see the many bright, delicate flowers emerging amidst the harshness of the desert.  I look forward to seeing them every year.

Saguaro Cactus

Beehive or Hedgehog Cactus

Staghorn Cactus

Prickly Pear

More Prickly Pear Blooms

Every once in awhile, when I feel up to it, my parents also now wheel me to the large sliding glass door in their bedroom for a quick glimpse of the sunset.  Arizona sunsets are truly breathtaking, with such deep, vibrant blends of orange, pink and yellow.  Photos don't do them justice.



Cool Sunset Sky

I had a lot of health-related issues going on this spring as well, which required a few extra, unanticipated doctor appointments. While each appointment took place at home, the energy expenditure still led to some setbacks.  Such is the frustrating nature of this illness.  But, I am slowly recouping and have hope that I will bounce back to previous levels in time.

As I attempt to gain a bit of strength back, the birds and various wildlife continue to keep me company from my windows.  Here are a few of my favorite visitors of the last couple months.

Antelope Squirrel on the First Day of Spring

Cactus Wren

Juvenile Cooper's Hawk


Gambel Quail

Bunny Munching on Snack

 And finally, nature always offers up symbols of hope:

Rainbow After a Storm

Wildflower Growing Through a Crack in the Pavement

"Where flowers bloom, so does hope."
~Lady Bird Johnson

Tuesday, May 10, 2016

Millions Missing

In support of the #MillionsMissing campaign, below is a photo of a pair of my shoes in our driveway, representing the fact that I am one of the millions missing from society and from every day life as a result of myalgic encephalomyelitis (ME).

It's been 16 years since I have been able to enter the outside world in any capacity beyond doctor's appointments.  I've lived in this house for well over a decade, yet have never once been able to step out through our front door or stand in our yard.  In fact, it's been almost 10 years since I've been able to stand at all, or take even a single step outside of my bed or wheelchair.

In recognition of the millions of patients who, like me, are suffering without reprieve and are confined to our homes and beds as a result of ME, the advocacy group #MEAction has organized a community-based protest that will take place on May 25th at the Department of Health and Human Services (HHS) in Washington, DC as well as many other cities across the globe.  On this day, ME patients, advocates, caregivers and other allies will unite to protest the lack of government funding for research, clinical trials and medical/public education.  This lack of funding for research and education has left millions of patients without treatments or relief of their symptoms for decades, and has cost the U.S. economy an estimated $18-24 billion per year.

The goal of the #MillionsMissing campaign is "to give the 1 to 2.5 million disabled American ME/CFS patients their lives back, and to prevent even more children, teens, young adults and adults from joining the ranks of the millions who are already missing --- missing from their careers, schools, social lives and families due to the debilitating symptoms of the disease."

The campaign is demanding the following:  
  1. Increased Funding and Program Investments
Funding and program investments commensurate with the disease burden
  1. Clinical Trials
Clinical trials to secure medical treatments for ME/CFS
  1. Accurate Medical Education
Replacement of misinformation with accurate medical education and clinical guidelines
  1. A Serious Commitment
HHS leadership, oversight and a serious commitment to urgently address ME/CFS

For the millions of patients who are too sick to attend the protest, there are several ways one can participate virtually: by submitting shoes to represent yourself at the protests, taking photos of your shoes by your doorstep or somewhere outdoors (to show you are missing from the outside world), participating on social media (use #MillionsMissing),  signing petitions or sending a Congressional Pack to your congressmen/women and state representatives before the protest.

Whether you are a patient, an advocate, a caregiver or a friend of someone with ME, please take a moment out of your day to participate in this important event in whatever way you can. Thank you.